Friday, November 9, 2012

what they said.

call me a coward or whatever, but i didnt want to be around. i didnt want to infer inflection from the doctor. i didnt want to know from his tone that he was going to tell good or bad news.

i just wanted to hear it from EJ and talk about it later.

so at 3:30pm, EJ called me. they are rated on a scale from 1-4.

1 being totally benign and 4 being super aggressive and malignant.

reese's tumor is a 2. its officially called pilomyxoid glioma.

bottom line is what we already knew - she would have to have chemo. they will start her this month and she'll go every 3-4 weeks for a year. because of her endo stuff/sodium stuff, they might be 2 day stays where they do the chemo and then watch... and then she goes home after everything is back to balanced.

honestly, i am numb. i dont even know what to say. is there anything that i can say, anyway? it is what it is and now we have to restructure life to our new normal. the best news is that they have a plan to kill this intruder thats in my daughter's brain.

i am putting this, also, into our "its okay" file. because, honestly, they have a treatment plan. does it suck? do i want to punch a wall? would i like to run and hide and cry? of course. but i cant. i have to trot back up to the hospital tomorrow morning and hold my sweet baby and deal with everything for that day. we'll do PT and OT. we'll watch cartoons and i'll make her cozy with her lay-lee. i'll snatch her from her hospital crib and rock in the rocking chair for as long as she'll let me.

i want to play with her hair while she has it. brush it. braid it. put horrible bows and headbands in it. not because i care about the hair, exactly. thats superficial bullshit, obviously. but bc of what the hair loss means. that there is a tumor in my 2 year old's head.

i am writing down q's to ask the oncologist on monday when EJ and i both sit down to talk with him/the team. but i already know they cant answer the questions that i want to know -- could it be longer? shorter? how sick will she get? will she be able to do normal things in the weeks between? will it come back? are we ever going to be able to go to bed at night and think "glad thats over"?

only God knows that.

so, while i have a lot of photos -- happy photos -- to post for tomorrow, tonight, while i am at ashley's house with miller, i am just going to write the update of today. overall, it was okay. tonight she has a bit of a fever and so they took blood to make sure that its not an infection, so please pray that its not.

thank you for every prayer that you all say daily. God hears us. and while i know that he won't put us through anything that we can't handle - that doesn't mean its easy.

34 comments:

you're incredibly strong and it's ok that you couldn't be there in person to hear the results. that is not cowardly one bit. I will keep praying for sweet little Reese to have a full recovery and peace for you, EJ, the girls, and your families. hugsStacey

Amanda. You may want to look at Natalie Hill's Facebook/history. She is a teen with lung cancer, and while it's not the same, she seems to live an amazing life between treatments (her bucket list) . I'm keeping Reesey in my prayers always<3

Amanda- you are amazing. You are so right when you said "God doesn't give us anything we can't handle". This isn't going to be easy- but if anyone can handle it, its you. We are definitely going to keep praying for Reese and her doctors- and your entire family.

I think you are amazingly strong, don't doubt that. And the onc team should be able to answer almost all those questions and more. Not only do they answer those questions for parents just like you, but there is tins of research and protocols etc that they base their practice on. Basically, it's been done and proven and they can give you hard numbers if you want, but I would suggest waiting in those.

I've haven't read in about a week and a half or so, and I'm just...stunned. Stunned. The last post I remember was the pumpkin patch, and then I click over and Reese...has a brain tumor? Words fail me. And tears stream down my face as I type this.

First and for most, I am sorry. Just so, so sorry - for all of this. But most importantly I will hope and pray with every fiber of my being that your beautiful, precious daughter will overcome this monster and that your family can put this whole ugly mess in your review mirror soon. So soon. I've been reading for years and this is just heartbreaking.

May perfect health return to your family soon. All the best, with all my love.

Sending a specific prayer up to God to make this a healing process. Please God, heal Reese with your hands. Wrap her in your heavenly warmth and protect her from all illness, sickness, diseases and trauma. In your name we pray. Amen.

Have the girls sing hymns in honor of Reese. The Lord hears children's prayers faster because they are younger and pure of heart. My boys are singing prayers for her too!

Sending so many prayers for Reese and your family. God wouldn't bring you to it if he wasn't going to be there to get you through it. You have an amazingly strong family, and your Reese is going to kick that tumors ass.

Cancer is a horrible condition that has struck my family and friends. Too many of them. Itis curable though and little Reesey will be healed. I strongly believe the power of prayers and a positive attitude works wonders in the healing process. While Reesey is going through chemo please remember that. It's not easy for anyone, no matter what your age is. Keep her smiling, keep her laughing. Take care of yourself too and lean on your friends, family and faith. Your family will make it through this. I don't know you and I don't remember you from the bump but we were there at the same time. I will keep your family in my prayers and continue to check your blog and FB page.

My prayers are with you tonight and every day since I read about little Reese... Remember that when it feels like our worst- we are not alone.. God is right there beside you.. Even on the horrible days he'll make his presence known by a sweet smile from Reese to a milestone that she goes through fighting to be healthy again!!! I will continue to pray and keep your sweet little girl in my thoughts along with all of your family.. With love another fellow mom of 4 :)

Stay positive and strong, medicine has evolved so much and with the power of prayers your baby girl will be healed, so many of us have been touched by little Reesey and the power of prayer is stronger than anything in this world...This is just a nightmare that soon will be over and it will have made your family so much stronger. Much love and prayers coming your way!

Amanda, you and your husband are so incredibly strong! You are handleing this horrible monster that has invaded your family with great courage and strength! The power of prayer works ! You all have so many people from near and far praying for your family and precious Reesey! Stay strong and have faith ...our prayers will be answered... Xo from the Barretts

Amanda, I am praying for little Reese's healing. I encourage you to go to the word of God & read Matthew 8:17 & Matthew 18:18-19. May the Lord Jesus give you the faith to believe. I pray that the Lord would give you his peace that passes all understanding. I pray that God would keep his hand upon sweet little Reese & keep his hand upon your family.

I don't know you or your family but my heart hurts to read what you are going through. Please know there are strangers to you in this world praying for Reese and for your entire family. This will be a tough year, some days unimaginably so, but you will come out one way or another on the other side. Stay strong, motivated and loving. You all need each other. Positive thoughts and heart felt prayers.

Amanda, it's Heather R from The Bump. My heart hurts seeing your pictures of sweet Reese. I feel like I've "known" your girls for many years now, and Reese and Sasha are the same age... I feel very invested in your story. You have my every warm, healing thought and I have put in a prayer request at Jack's school. I also am currently teaching a student who is a cancer survivor. The National Honor Society kids at school are doing Saint Baldrick's, a fundraiser where they show solidarity with kids going through chemo by shaving their heads! Some teachers are joining in, too. :) I hold your little girls-- all 4-- close to my heart and am sending you strength for the days. Keep the faith.

Also (still Heather here), I found these stories of experience, strength, and hope. I will make a donation to the organization or a similar one for you. http://www.fightplga.org/community/Stories_of_Inspiration

I've "known" you for years from the Bump. I check back occasionally to see your adorable girls. I was so saddened to hear about Reese's diagnosis. I cannot imagine what you are going through. Please know that so many people are praying for your family. I will be sending the girls a postcard soon.

this.years.love.

I am wife to E.J. and mom of 5 [ginger] girls. I'm a Dallas photog who thrives on telling stories with the in between moments and chasing the sun until bedtime. Wine drinker. Book reader. Mom'cologist to one. I spend each day knowing that every moment is a gift. I like to read sad books and laugh until my sides hurt. I write to tell our story. All of it.